The New Hundred Percent

Last Year’s Christmas Festivities at St. Arnold Brewery, Houston15271846_10154695055810883_3708006019656483288_o

The last three weeks I’ve been prepping myself for a long awaited boxing match with my disease. My fists are up, gloves tied, and I’m poised to knock out my opponent, even if it takes all twelve rounds. When I returned from my trip to the states I was pretty exhausted. After two weeks of being on my A game I was ready to lie on the couch for a day or so and tune out the world. I was also scheduled to take my monthly oral chemotherapy pill for five days, so I closed the curtains and settled in for the long haul. At this point I had been off steroids for more than a month. I had about enough energy for one to two activities a day. (Yes, showering and putting on clothes counts as an activity…) My head really hurt when I tried to lie on pillows and sleep. I mentioned it to Jon in California a few times, and we agreed to get an MRI scan as soon as we returned to Santiago.

The only hiccup was that, while I was away, Dr. Majlis moved to a rival hospital in Santiago, Clinia Las Condes(Clc). Before I left Chile we scheduled my treatment for when I returned at Clinica Alemana. I messaged Dr. M about the pain I was having in my head and after some texting back and forth, I also had an MRI scheduled at the same place, on the same day. My mom declared that the online message exchange between doctor and patient NEVER would have happened in the states. I was pleased at how much personal attention I was getting in Chile and happy with my decision to follow my doctor to the other hospital. I psyched myself up, took a few practice swings, and danced around the ring.

Unfortunately, since Dr. M moved permanently to Las Condes, I had to go pick up the MRI results at Alemana and bring them to him at the new hospital. I figured that since I spoke Spanish I could do some preliminary analysis of the results before handing them to the doctor. Unfortunately, though, the analysis was extremely hard to translate and interpret. There were whole sentences that I couldn’t manage at all. Needless to say, my inadequate translation of the scan results did not indicate anything positive from what we could tell. I put up my fists ready to deflect some cancer blows. I took a picture of the lab analysis and sent it to Dr. M. After perusing it, he quickly set up a new MRI at Clinica Alemana, to take a closer look at the area surrounding my brain lesions. The previous MRI hadn’t clearly indicated whether the lesions in the area were growing, or if they were surrounded by necrosis, or scar tissue. Either way, the lesions appeared bigger on the scan. I still had two more days to wait. Cancer had stuck the first blow but I went back to my corner. Jon gave me some water, fixed me up, and gently sent me back to the match.

Our first visit to Las Condes went very smoothly. Traffic was not as bad as Jon feared, and it was much easier to find parking than at Alemana. When we made our way up to the Cancer Clinic we were greeted personally in the waiting room by our assigned administrative assistant. She was lovely and told us she would be setting up all my appointments and communicating them to international patients for me. That way my insurance company would be informed and I wouldn’t have to pay out of pocket. I was ecstatic.   It seemed a lot easier than the system at Alemana, which I guess is one of the major reasons Dr. M left. I threw a tough right hook/upper cut combo and it landed squarely on my opponent’s jaw.

Cancer seemed a little deflated but got in a few jabs of his own. When we finally sat down with Dr. M to analyze both of the scans, he said, unfortunately, that the second MRI was also inconclusive. He and the radiologist still couldn’t say for certain if the lesions were growing or if they were surrounded by necrosis. He needed ten days to send the scans to his friend at MD Anderson Cancer Hospital in Houston to get a second opinion. I saw cancer pull his fist back and take a big swing, but Jon and I ducked just in time so we weren’t hit. After avoiding the blow we sat in our chairs to hear what the doctor had to say.

The only conclusive information from the scans, at the time, was that I had no new lesions. I was relieved but not enough to declare the match finished. I still have massive amounts of swelling (edema) from the radiation treatment in April. The swelling was causing the pain and also the fatigue.   So, to combat these two symptoms Dr. M put me back on the steroids, albeit at a lower dose than seven months ago. At first I was excited because the drugs worked right away. The steroids were like a jolt of energy. I had bounce in my step and an appetite again. In the morning, my stomach was stable enough so that I wasn’t burping up the water I drank from the bedside table in the middle of the night. I had so much new-found energy I enjoyed being in the kitchen again, working on my travel plans, and organizing events. The other day I even walked to the grocery store, shopped, and walked home with three full bags of groceries. I was spent but overjoyed. After a series of quick jabs I made it to the next round. And with only one slightly obvious wobble…

Before I celebrated completely though, I put away the groceries, and allowed myself to be lured in by the quiet calm offered by the comfy couch cushions. I took a little nap and woke to dark cloud cover. I turned over and began to cry, softly at first, and then I just let it all go. I pulled myself up from the cushions and sat on the edge of the couch. As I sat there hopelessly without my hands to protect me, the unfairness of my reality sucker-punched me in the face and I fell back into the pillows. How sad to be thirty-five and excited to go to the grocery store. How depressing to not have a single thing planned after Feb 8th. I used to be an exercise fiend and I still can’t walk a dog to the park and back. My body is no longer strong and muscular as it used to be five years ago. I am weak and flabby and covered in bruises where I have fallen against some table or chair I wasn’t supposed to bump into. I staggered back to my corner and let the depression take over.

When I’m out in public by myself I feel people watching and wondering why a flight of stairs stops a healthy looking, young woman in her tracks. When I get a little too tired and start to lurch around corners, I envision people reaching out in horror, afraid I will fall. It embarrasses me, but there’s nothing I can do about it except ignore it. I’m sure everyone thinks I’m a drunkard who can’t walk a straight line. And they wouldn’t be far off, except that, most of the time, I’m entirely sober. Although I can walk better and straighter than I could in April, a large possibility remains that I will fall straight on my butt, and there will be nothing to stop the fall from now until eternity.

My caring husband is usually the one to offer a hand and lead me through the frightening maze of humanity, stairs, lights, etc if you go anywhere in public.  Especially if you have lost confidence in your strength and ability.  Jon’s love has been unwavering and I am extremely grateful for him. He knows if I need to take a break and rest on a bench. He understands how tired and how embarrassed I feel at having to need him so badly.  Before the steroids returned, my pain and fatigue was getting so bad that Jon and I actually sat down to have a serious talk about my declining condition. Jon watched me fall apart and let cancer get in a few blows without me even attempting to defend myself. He was now sad too.

I looked into his blue eyes and asked, “What if this is the new hundred percent?”

His blue eyes gazed upwards as he stroked the hair I’ve regrown on my head. As the questions went on I grew more and more morose, but also more matter of fact.

“What if I never walk in a straight line again?”

“What if I’m dizzy and tired for the rest of my life?”

Usually Jon and I stop our conversation at this point. Since we can’t predict the future, what’s the point of talking about it?  For the last few weeks, though, Jon and I have only told a few people what’s going on and how serious it might be. There just isn’t a way to spin it positively. We prefer to put on a brave face, smile, and enjoy life as normally as possible. But sometimes it’s very, very difficult to enjoy it. I’m tired. Although the steroids have given me energy and hope, I am still so tired. Of everything… I don’t want to be so far away from the old Eli that I can no longer reach her. After this latest radiation treatment it takes all of my willpower to bring a version of the old Eli back, even for a couple of hours.

Luckily, this weekend was one of those times when the old Eli stuck around for more than usual. We held our annual expat Thanksgiving celebration at our house this year. Twenty-five guests were coming over and I felt good. I happily put on my apron and proceeded to spend all day in the kitchen making turkey, two kinds of stuffing, and gravy. The Christmas music was blasting in the background.  Jon and Agustina were whistling as they worked.  It was a joyous occasion. Jon and I followed up our Gracias Giving success by judging and hosting an amazing Disco Mary Adventure Race where Nido teams dressed in costumes and participated in several athletic and silly cultural activities and games throughout Providencia. I stood confidently in the doorway.

“Come and get me now, cancer!” I taunted.

I thought I would continue my streak of optimism, so instead of moping around the house Monday and binging on Netflix,  I decided to pack up the computer and find a beautiful place to write. Buoyed by a glass of chardonnay, I typed away at my laptop and released my emotions into my words.  As I was typing, though, it became really warm outside. Round ten with cancer had arrived. I was sweating through my jeans. I packed the computer away, chugged a glass of water, and swung my bag over my shoulder. I headed for home.

“Only five blocks till home. If I stay in the shade and keep my head down, I’ll be fine,” I decided.

Unfortunately, though, the blocks grew longer and longer in the heat of the day. There wasn’t a lot of shade to keep me cool. My school bag hanging over my shoulder with the laptop felt like a lump of lead as I trudged along. Since I had earlier decided to keep my head down, I didn’t see the biker heading straight towards me on the sidewalk.  I looked up and quickly swerved to the left as he zoomed on by.

“Uh oh, I’m goin’ down…” I thought, as I tried to regain my balance on the slanted, cobblestone driveway.

There was really nothing I could do to stop the fall. The weight of the laptop in the bag was pulling me down and there was no way to counteract it. There was nothing to hold onto or lean against. So my worst fear happened: I fell in broad daylight, the concrete almost tearing a hole in my jeans. For a second I sat stunned in the driveway with my arms raised, desperately hoping someone would help me up before anyone else saw me sitting there. I hadn’t expected to fall today since I feel so much better and am usually very cautious. I started to ask for Jon’s assistance standing up, but realized no one was there to help me but myself. Slowly and surely I dusted myself off, put my sunglasses back on, nursed my new leg wound, and picked myself up from the sidewalk. I did not look around to see how many people saw me fall. Cancer had definitely knocked me down.

“However, I’m not down for the count yet,” I thought.  I straightened out my shirt, held my head up high, and carefully limped the rest of the way home.

16 comments

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  1. ashley

    I’m also with you in spirit, Timms. You’re so strong…and allowed to be really really sad whenever you want (as you know). The situation is just terribly sad — that doesn’t mean we can’t love life all at the same time, right?

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  2. K. Elortegui

    Eli, thank you again for sharing what you’ve been experiencing most recently. And oh my goodness, I continue to be so inspired by you–especially by the good and important work you put into trying to be positive but also by your raw honesty when you don’t feel that way. I continue to think of you and root for you and send you love!

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  3. elorteguiwanderlust

    Eli, thank you again for sharing what you’ve been experiencing most recently. And oh my goodness, I continue to be so inspired by you–especially by the good and important work you put into trying to be positive but also by your raw honesty when you don’t feel that way. I continue to think of you and root for you and send you love!

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  4. Jane Chesney

    How great it was so see you in Houston recently!
    By the way, I was young and healthy the day I literally knocked myself face down walking down my own driveway with two heavy wet bags of leaves for the weekly trash pickup. My new jeans were ripped, my chin and knees were bleeding, and all I could think of was, “Who might have seen me fall flat on my face?”

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    • eliswift4

      Thank you Glenda. I also understand you sent me a package which I never got. Stupid Chilean post! If you want to mail something in the future the schools address is best. They have someone there to collect mail 24-7 so it would be less likely to get lost. But it truly is the thought that counts. Thanks for thinking of me

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